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Everything posted by musicbuff

  1. Hi, While trying to get a handle on what triggered the recent onset of anxieties /OCD for my dd7 and exploring the PANDAS/Lyme angles, we are also exploring the therapy aspects such as CBT, ERP etc.. We want to understand how these work, how effective they are in general and what should we general expect. Would appreciate all feedback (both negative and positive) on this thanks MB
  2. Thanks Vickie. I will email/call them and keep you all informed. MB
  3. I saw in one of the threads somebody mentioning to contact Kathy Alvarez and or Dr Cunningham for order/interpreting the Cunningham tests. Would appreciate if somebody can PM me the contact number. MB
  4. Hi, I have always suspected artificial colors/flavors/preservatives for my daughter's vocal tics. While we had noticed many times whenever she had taken some lollipop etc.. it just blew up when she was on Amox (pink suspension) last year for 7 days (2x a day). It took almost 2months for her vocal tics to subside from that. How do you go about getting prescribed medication without any artificial stuff?? (not just dye-free)?? Call up the Pharmacy and ask? Can doctors order them and provide the instructions to the Pharmacy? Also, what is the verdict on the following inactive ingredients from 250mg Azith tablet? What are the offending ones other than the dyes? butylated hydroxytoluene, calcium phosphate dibasic anhydrous, carmine, colloidal silicon dioxide, FD&C red # 40 lake, FD&C yellow # 6 lake, hypromellose (2910, 15cP), lactose monohydrate, magnesium stearate, pregelatinized starch, sodium lauryl sulfate, talc, titanium dioxide and triacetin. TIA, MB
  5. Looking for some feedback(both positive and negative) on neurofeedback for my dd's anxiety/OCD/defiance issues. Also, if you have any recommendations for good neurofeedback centers in California (Bay Area), please let me know (or you can PM me) thanks MB
  6. Dear tantrums - What is serum sickness from antibiotics? Some sort of allergy to one of the (inactive) ingredients of the antibiotic? So immune system (in this case) got confused with the antibiotic??
  7. After a 5day course of Azith, 3-4 days after finishing the Abx course, I notice increased anxiety/OCD levels in my dd7. I have seen it atleast two times. Once in 2007, Azith was given for ear infection and 3-5 days later she had sudden anxieties for flies/bugs and after some 2-4 weeks, it subsided. This time, 3 days after 5-day course of Azith, her anxieties for objects being toxic or harmful if swallowed increased a lot with a wax-wane pattern and seems to be evolving with new worries. Does anybody have such an experience with Azith (or any abx) for their kids? MB
  8. I do not have great advice since I am quite new to this forum and have started on this journey of suspected PANDAS/PITAND for my dd from Nov 2010. However, ibuprofen (short term) and Omega-3 (and upping them if you are already taking it) are safe bets to reduce inflammation. While I do not know anything about OLE, I have given GSE (Grapefruit Seed extract) for brief periods for my dd's yeast issues. GSE is supposed to be a safe ani-microbial (anti-bacterial, anti-fungal etc.) Regarding your dd's episodes, you mentioned that your dd improved for about a week of starting ABx and then had increases in her symptoms. How long did it last for your first episode? After it increased (about 8-10days of stopping ABx) did it subside/taper on its own? Also, I am curious to hear from the experienced and knowledgable folks on this forum, why do you think the symptoms increase after 4-5days of completing say a 5-day course of Azith (in this case). I thought the effect of Abx lasts for 21 days (half life for antibodies), so why should the effect of Abx taper off after 4-5 days of stopping Abx? Am I missing something? Sometimes I wonder, in some cases, where the symptoms increase after 4-5days after completing a 5-day course of Abx whether the Abx causes the already primed immune system to create more antibodies which can escalate the auto immune response to basal ganglia across the breached BBB. May be the improvement during the 5-day course and 4-5 days after is because something like Azith also being an anti-inflammatory and thus subsiding the symptoms during that period. So once Abx is stopped, the anti-inflammatory effects stop increasing the symptoms?? Again, I am a newbie on this forum and just started this journey for my dd and would really appreciate input from the expert folks in this forum who have tirelessly spent hours to research these scary disorders to help our kids. MB
  9. Looking for some feedback(both positive and negative) on neurofeedback for my dd's anxiety/OCD/defiance issues. Also, if you have any recommendations for good neurofeedback centers in California (Bay Area), please let me know (or you can PM me) thanks MB
  10. Hello, Can you please let me know the process to do Cunningham's test? Who to contact, who needs to authorize (we can get our Ped to authorize if needed) etc.. Would very much appreciate if you can provide this info as a reply to this thread of as a PM (if you prefer). TIA, MB
  11. This sort of hit home for me.. since I am unsure if my dd's onset of OCD/anxiety was purely PANDAS/PITAND or some other infections (yeast or some other viral issues). Here is the timeline of events 1. Nov 1-15 : Mostly defiant behaviour, frustrated and upset for small things, 2. Nov 15 -22 : worried about breathing, anything touching the neck/throat, cannot hear herself well (although she sounded fine for us) 3. Nov 22-23 : Fever (unknown). No physical symptoms(ear, throat, chest, all fine( Doctor gave Azith to rule out secondary infections 4. Nov 23 -24: Took Tylenol/Motrin for fever 5. Nov 24-28 : Took Azith (5 day course, 500mg 1st day, 250mg next 4 days) 6. Dec 2 (3 days after completing Azith) : Worries/anxiety increased 7. Since Dec 2, we have seen anxieties increase/evolve and some wax/wane pattern. Several rapid Strep test and culture has come out negative. Waiting for titers (mainly for baseline) Based on this, I am unsure if untreated Strep triggered the events from Nov 15, or may be an underlying infection (unrelated to strep) had already put it in motion and the Nov 24-29 Azith probably cleared some bacterial infection or may be just acted as an anti-inflammatory if the issues were really viral/fungal. Other worry I have is if Azith actually increased the intensity of anxieties since I seem to remember her symptoms before Nov 22 seemed to be milder than post Dec 2. Any ideas, clues? MB
  12. Has anybody used GSE and/or any other natural antibiotic/antimicrobial daily supplements to thwart any new infections rather than propphylactic Abx? Do you know of any reactions of GSE with any other medications? MB
  13. Dear Meg's Mom - What are these y-boc scores? What tests are these? thanks
  14. Hello, How is EPV typically tested? Should we ask for a "Mono test"? Is this the same as EBV antibodies test? My dd7 has PANDAS symptoms, while waiting for her throat culture for strep and ASO titers, want to rule out PITAND.
  15. Hello

    I am new to this forum and currently suspecting PANDAS with my dd7. I live in Cupertino and currently looking for good references for Pediatric Immunologist.

    If you are happy with your Immunoligist and willing to share his name, can ypu PM me? I will be ever grateful,



  16. What is the process to get a Cunningham test? Would appreciate any info? MB
  17. The breathing fear was there before the high fever (may be a week before). Unfortunately, strep test was not done. This happened during vacation in Hawaii and the urgent care there while checked the ears, lungs, throat did not suspect strep since my dd did not complain of throat issues. So it appears the wheels were already in motion before the fever/azith - just not sure if the fever was viral/bacterial. Obviously Azith would have helped with the latter - unfortunately I have not much to deduct if Azith helped or not. Azith did cause stomach/acid reflux for my dd and had to use zantac/prilosec. I will checkout on the mycoplasma pneumonia as well - thanks Regarding Azith vs Amox for ear infections - good question. Her first abx was Azith(cannot remember) and later for ear infections, her ped gave azith since it can be a 3 day course rather than a 7 day 2 times a day Amox. Yes, artificial colors/flavors/preservatives are a complete no-no for my dd. With any infraction, we see vocal tics with certain words. One time she was given Amox ( 7 day course last year taking pink suspentions twice a day), her vocal tics got so bad, it took 2-3 months to subside. Many times I wonder if these additives trigger some antibodies which also interfere with part of the brain responsible for speech somehow crossing the BBB. The auto immune triggers could be microbial or food (may be food additives, wheat/dairy sensitivity etc..) Thanks for all the replies, I am reading the pinned threads for more info on some of the tests. Will keep you posted on the titers MB
  18. Hello, I just joined this forum and desperately need some advice and references. My dd7 is showing PANDAS symptoms for past 7weeks. It started initially as anxiety (breathing, poison, contamination, I feel sad etc..) and has slowly evolved into OCD (washing, checking etc..) We have had a couple of anxiety attacks and she is having a hard time going to school. While she had separation anxiety during her preschool days, for past 2.5 years she has been a happy, fun loving, well adjusted child and it breaks my heart to see her so worried and preoccupied with fears and sad all the time. At this point it is hard to say if she had any strep infections before, whenever we have checked, it has always been negative. So we do not know if this is her first episode or not, although I cannot rule out some minor cases which might have gone unnoticed. She has always been a healthy kid. Almost too healthy - hardly gets sick even during full blown flu season etc and even if she catches a bug, she has very mild symptoms, which worries me since I think she has a heightened immune system and may be prone to autoimmune issues. I do think she is prone to yeast though. During all these years, she has taken Abx 5 times 1. 1 year old - had fever (do not recall the diagnosis), Azith 2. 2.5 yrs - ear infection, Azith 3. 4.5 yrs - ear infection, Azith (twice) 4. 6.5 yrs - ear infection Amox 5. 7.5 (Nov 2010) - had fever, doctor suspected some secondary infection (Azith) Interestingly, for all these cases, my gut feeling is she probably did not absolutely need Abx. For ear infection cases, she had very mild symptoms (or probably high pain threshold - did not complain much) and we gave it more as a precaution. The last case as well, she had fever and it is hard to say if it was viral, but we were on vacation in Hawaii and could not take a chance of any infections blowing up. Her anxieties (mild at the beginning and it was just " Am I breathing?") started in mid Nov 2010, got 5 day Azith for high fever (the last case) Nov 24-28, anxieties continued to increase and evolve. We also started noticing some vocal tics with certain words and some changes in vocal quality. This started after Abx, not sure if it was Abx or artificial colors in the meds that triggered it. Her Rapid strep tests on Dec 7 2010 and Jan 1 2011, both came negative. At my request, her Ped has ordered throat culture yesterday and we will be getting her ASO/Anti dNase B titers today if not anything to get some baselines. At this point, assuming it is PANDAS, I am unsure if the 5 day Azith in Nov, helped or hurt. What if Abx actually activiated already primed immune system to go overdrive and is causing more issues? That is my biggest worry to give Abx now. Is there a way to safely determine if Abx would help or hurt - any tests? BTW, I see several folks mentioning Cunningham test? What is it? Is it a good indicator for PANDAS? I would very much appreciate some good references for the following (We live in Sanfrancisco Bay area, near San Jose) a) Good PANDAS knowledgeable doctors? Good pediatric neurologist and immunologists c) What other tests other than culture, ASO titers (Cunningham??, mycoP, anything else?) d) Anybody tried neurofeedback for anxiety/OCD? If so, any good recommendations in South Bay e) Any good CBT centers or other anxiety related therapies that you can recommend in Bay area? f) Any other advice?? Sorry for such a long post, I am trying to read and learn as quickly as I can. This forum and pandasnetwork.org is truly a god-send! Would appreciate your helpful advice, keep up the good work and god bless us all.. MB
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